My colleague at Age of Autism wrote this post. He began writing about autism in 2003 when he was with UPI. So many "outsiders" write about our families with false superiority, high and mighty proclamations, even barely disguised disdain. Not Dan - he has the heart, compassion and logic to see first hand the walk we walk.
By Dan Olmsted
I try not to comment on the choices and difficulties faced by families dealing with autism -- mainly, because mine is not one. But after nearly a decade (yes, I first edited an investigation of the CDC and vaccine conflicts in 2003), I will venture to say this: The holidays are not always "the most wonderful time of the year" promised in song, advertisements and cultural come-on of all kinds.
There are multiple reasons for this, I think, including the simple inability to gather the way many would wish, due to logistics and occasionally resistance, implied or fully expressed, from other family members. And it can be a bit hard to identify exactly what it is one ought -- ought, never a good word -- to be thankful for. But there's more to it than that, as witnessed in this e-mail exchange I was part of earlier this week, about a child who "ages out" this year right between Thanksgiving and Christmas:
"I'm rather a wreck over it -- haven't brought her paperwork from probate court to town hall. I just haven't had the heart or courage. It has cast a pall over the entire holiday season. -- so I'm just looking to January to start the year and do the same stuff all over again -- I'm pretty tired right now, and you know how that goes."
Well, I don't know how that goes, personally. Cheap, teary empathy is already too much in vogue. To the extent that I have any insight at all, it mostly comes from talking to, visiting, staying with many families over the years and reading their accounts right here, on AOA. But the other person on this e-mail had plenty of experience.
"We are at a bumpy road and really have been for a while," said this mom, whose daughter is about the same age. "It is so hard, all of it, and I wonder how we do it."
Thanksgiving, especially, is all about family. And one thing I do know for sure is that the autism epidemic reflects a fundamental betrayal of American families. Doctors and journalists and judges and scientists, among many others, have failed in their duty to listen to the real stories of real people, real families, and instead have thrown in their lot with the Bigs -- big medicine, big pharma, big media, big government, big money -- and left families to fend for themselves.
I could do without hearing the phrase "family values" ever again, or at least until those afflicted by autism and other disorders of our Age are heard, understood and compensated, the epidemic ends, and those who let this calamity arise and drag on face some sort of accountability, truth and justice.
Meanwhile, I suppose, we all (or most of us) will slog on, but I don't expect a lot of the folks I know to be particularly festive about it.
"'Happy Thanksgiving' can be an oxymoron for so many of us," wrote one the e-mailers above. "But I do give thanks for all of us being together in this. I wouldn't be able to do it otherwise. Though we are all scattered around the country, just knowing you are all out there fighting with me gives me courage."
As for me, I'm thankful for this, which Anne Dachel quoted in an e-mail lately: "I take comfort in the knowledge that my job is to wake up every day and do the next right thing." -- Paul Arthur.
Dan Olmsted is Editor of AgeOfAutism.com